J-elita – the association of people suffering from Crohn’s disease and Ulcerative Colitis, for the fourth time in Poland, organizes the World Day of IBD. This year, two events will take place: in Warsaw and Krakow.
The aim of the action is to disseminate knowledge about diseases from the group of inflammatory bowel diseases and to draw the attention of decision-makers to the problems of sick people whose needs have not been heard for many years, which difficulty or lack of access to modern biological therapies.
What are Inflammatory Bowel Diseases?
Inflammatory bowel disease (IBD) is a chronic autoimmune disease caused by a malfunctioning immune system. They include, among others: Ulcerative Colitis (WZJG), Crohn’s disease and microscopic enteritis. Today’s medicine cannot cure them, and the goal of therapy is to achieve and maintain remission; that is, when the disease is inactive and the symptoms completely disappear. The characteristic symptoms of IBD are debilitating prolonged diarrhea, colic abdominal pain, weight loss, and fever. During the development of the disease, serious complications may occur, such as: rectal bleeding, fistulas, abscesses or complications from other organs, e.g. joint, eye, skin and pulmonary changes, as well as liver and kidney diseases. Often there is also a need for surgical interventions.
Incidence in Poland
It is estimated that in Poland about 10-15 thousand suffer from Crohn’s disease. people, while with ulcerative colitis struggle from 35 to 40 thousand. sick. Most often, IBD affects people between 20 and 40 years of age, i.e. those who are fully active in their work and life. In recent years, in developed countries, a significant increase in morbidity has been observed, and more and more often in children, and about 25% of new cases are found in people under the age of 18.
Living with NZJ
The disease, due to its course and symptoms, hinders everyday functioning and very often prevents the continuation of education, the implementation of professional plans or life passions. The embarrassing symptoms of IBD cause the social awareness of the problem to be negligible, which deepens the feeling of alienation, loneliness among patients and often leads to depression. Therefore, it is extremely important to diagnose the disease early and undertake appropriate treatment in order not to exhaust the organism and improve the patient’s quality of life and give patients a chance to function normally in society.
“Our disability is often not seen, but it does exist and significantly deteriorates the quality of our life and makes it very difficult. I often hear from people that I don’t look sick. Then I reply to them with words that I once heard from a very wise person – I cannot see the disease because I do not have my appearance, ”says Agnieszka Kowalczyk from the Main Board of the J-elita Society.
J-elite in the fight for the welfare of the patient with IBD
Over the years, the J-elite association has managed to do a lot, but there is still much to fight for! Patients with Ulcerative Colitis (UC) do not have a biological treatment programwhich is publicly available and registered in another disease entity. Only adults with the most severe form of the disease, at risk of colectomy, i.e. removal of the entire large intestine, may receive 3 doses of a biological drug that salvages the intestine – but this is still not enough. Children with UC do not even have this chance, and young Crohn’s disease patients can only be treated with one of the available drugs, even though the other is approved for children.
The J-elite Association also wants to pay attention to extremely stringent criteria for including children in drug programswhich are the most severe of all European Union countries in Poland. This situation is difficult for the Society to accept. We want access to the most modern methods of treatment – biological therapy, to all patients for whom there is at least a shadow of hope for stopping the symptoms, improving the clinical condition and avoiding mutilating surgical operations.
Another problem is the discrimination of groups of disabled people, including people suffering from IBD, which manifests itself withdrawal of the right to parking cards previously granted. For incomprehensible reasons, these cards will be withdrawn on November 30, 2014 to all disabled people who do not have a symbol indicating a disease of the musculoskeletal system, pattern or neurological disease in the certificate on the degree of disability. However, people with inflammatory bowel disease also have difficulty moving. The course of the disease and the side effects of drugs cause the deterioration of eyesight or changes in the osteoarticular system.
Due to abdominal pain and persistent massive diarrhea, sometimes up to several dozen times a day, patients with IBD must immediately use the toilet. Having a parking card gives you a chance to park your car quickly and thus avoids a situation that offends human dignity – such a right of a sick person can hardly be called a privilege, as most people define having the right to a parking card. Practice shows that patients with IBD, despite having dysfunction of organs other than the digestive system, very rarely receive the second symbol of the judgment. Taking the cards away from patients with IBD will cause some of them to stay at home for fear of not being able to use the toilet immediately, and thus lead to their social exclusion.
Celebration of the World Day of NZJ
For several years, it has become our tradition to organize the solemn celebrations of the World NZJ Day, which, due to the date, are combined with an event on the occasion of Children’s Day. This year, on May 18 (Sunday), the Mazovian and Lesser Poland branches of the “J-elita” Society will organize meetings in Warsaw and Krakow.
Warsaw – Central Clinical Hospital of the Ministry of the Interior
From 11.00 to 13.00 we invite you to the lectures given by: prof. dr hab. n. med. Grażyna Rydzewska – National Consultant in the field of Gastroenterology, Dr. Katarzyna Karolewska-Bochenek, MD, and Katarzyna Malinowska, MA. The educational part ends with the artistic part in the gardens of the Central Clinical Hospital of the Ministry of the Interior at Wołoska Street.
From A family picnic will begin at 13.00 p.m. Our exhibitors prepared a tasting of nutritional preparations as well as educational and information materials. Participants will be able to consult specialists and talk to other patients. Guests will see min. artistic performances and shows, will be able to take part in competitions with prizes.
For years, the toilet fashion competition has been an inseparable form of entertainment – today we encourage you to prepare creations made of toilet paper or using other toilet equipment. During the outdoor event, you will be able to admire the exhibition „Perspectives – Art, Inflammation and Me” featuring works by artists who took part in the worldwide AbbVie initiative. The result of this cooperation is a global gallery of photos, paintings, sculptures and other artistic statements, which are the artists’ unique view of the lives of people suffering from autoimmune diseases.
The picnic will end with a battle for colored toilet paper, in which we cordially invite everyone to participate!
Krakow – Dworek Białoprądnicki
From 16.00 pm to 17.30 pm, lectures will be given by Dr. Małgorzata Sładek, MD, Dr. Bernadetta Majerczyk (Eskilstuna, Sweden), Dr. Monika Kascha-Przepióra and Dr. Agata Wasilewska.
The “BUY OF LAUGHTER” family picnic will be held throughout the event. The program includes: games for children with the volunteers of the Dr. Clown Foundation, art and music workshops, zumba, demonstrations of LEGO robots, competitions with prizes. At. 15.30 the ceremonial opening of the exhibitions will take place Extraordinary life i My window to the world and the awarding of prizes to the winners of the art competition Hospital Diary. Producers provide tasting of nutritional preparations as well as educational and information materials. Participants will be able to consult specialists and talk to other patients. The J-elite Society has published guides and information guides on inflammatory bowel diseases (Crohn’s disease, ulcerative colitis, etc.) which it publishes.
At the end of the event, children will present their picnic art and sing the hymn of their own party.
More info on page www.j-elita.org.pl
The “J-elita” Society was established in May 2005, and since 2007 it has the status of a public benefit organization. We associate people suffering from IBD. These diseases include, first of all, Ulcerative Colitis, Crohn’s disease and microscopic enteritis. These are autoimmune diseases that modern medicine cannot cure. Despite the therapy, patients have periods of exacerbation that significantly complicate their daily life – not only do they spend a lot of time in the hospital, but often cannot simply participate in normal everyday life.